Tuesday, March 25, 2008

Our life is pretty much in a new normal routine now. Everyday the kids go to school, then to activities. Hannah is now on a regular routine with school, I don't wait by the phone all day any longer for them to call (although I do always have the phone with me.) Part of my routine every day is still research-research for recurrence protocols. I know you may be wondering why. But I would rather be prepared and at least somewhat familiar with what's out there, rather than be blindsided totally. I also follow many kids websites. Some of these kids are doing well, and others have already been killed by cancer. Killed? Yes-when you hear their parents talk about how their children were taken from them, they are clear-cancer killed their child. This is cancer's only purpose-to take over.

I did want to include a post from a cyber friend-Mimi. You may remember me mentioning her son Julian here several times. Julian lost his battle with his cancer earlier this year, January 19th to be exact. I have always loved Mimi's entries, through good times and bad for their honesty and frankness. Julian died of medulloblastoma. It came back only 6 months after he finished his chemo. With her approval, here is her last entry:

Today is Easter. Today is just another day missing Julian.
Before Julian died and I would read cps or cbs of kids that had passed I always thought, seeing parents mentioning dates and how hard it was on certain days, like xmas, bdays, holidays , that i didn’t think dates made a difference. Your child is gone and here without them is hell no matter what day it is... Oh boy was I wrong... Today is Easter, is Julian "more gone" than yesterday? NO... So why was it so dang hard? Was it dressing the kids up for church and only having to dress 3? Was it the Easter egg hunt that was going to take place without him? Was it because last year he was there ,walking those grounds, sitting in kids church, waiting patiently to go hunting the eggs, finally getting to hunt and finding the golden egg ? Was it because it was his last Easter day ,here on earth with us? Was it because I didn't go last year for his last Easter with us , I missed it, i missed him finding that golden egg and seeing how excited he was? Or is it just because today is just another day, here on earth without my baby? Just another day... You would think I would rejoice knowing that I am one day closer of being with him again. Nah, I think of what today could have been and wasn't because of this horror called cancer which only goal is to kill our children...
This was my son, last year :
(picture here that wouldn't copy over)

We went to visit his gravesite...This is my son this year...
(picture of Julian's gravestone)

The kids put easter eggs in a little bowl, and tried to clean up his stone some... Now , that breaks my heart , THAT makes me mad...

Anyways...We made it home ok... Kids were mainly good. I will be working on a SanAntonio/SeaWorld movie later...

I wanted to explain something to non BT connoisseurs. First I don’t want to upset anyone and i will not be saying that one cancer is better than others, I just want to explain a little about brain tumors...
When a brain tumor invades your brain, all kinds of things happen, depending on where it is located... Balance issues, nausea, vision, hearing, swallowing, talking, use of any organ commanded by the brain,...etc... If a BT patient is lucky enough to have a shot at treatment, because it is not always the case (DIPG, you have 6 months to a year to live period), dozens of issues can happen. First hopefully it is caught in time so you don’t have permanent damage to anything. Then surgery, either they take all the tumor out or they don’t. Either they come out of the surgery ok or they come out with problems like post fossa syndrome (symptoms go from mild speech issues to total mutism, paralysis etc...if you want to know more check out Quinnster's page Tidmore , read back from beginning), now those problems might subside in a couple of days or stick around for months and might not ever totally go away(by the way, I read that 1 in 4 kids will come out of surgery with PFS at various degree).

Next step ,after checking the spinal fluid for cancer cells (which reduces your chances even more if it is positive)radiations... We are talking about full brain and spine rads with boost to tumor bed.
You do understand what that means?? we are radiating a brain (in jus case) that is still developing , along with the bad it screws up the good... our children wont ever be engineers and more than likely will live with us forever, they usually don’t get married and have children, basically their social life is greatly affected . (all of them?? I don’t know, but seems to be a common thing…) .
Then there is chemo…Of course we all know what chemo does, can bring on another cancer such as blood cancer(or leukemia) , can make you sterile, can make you deaf or close to it , and a whole lot more…
As if all this is not enough, Bt patients, especially medullo kids have issues such as nausea and poor eating , so a lot of them at one point end up with feeding tubes. They also hate noise , bright lights and crowds. ( again these are common observation , nothing medically proven on a piece of paper) .

Then when all the treatment options are exhausted and nothing worked, death by torture is inevitable. There is no getting sick and falling asleep and never waking up … If you have been following Julian you know all that …

Why again am I telling all this, at the risk of scaring to death parents of BTs or Medullo patients? Because , need you to realize that after rads, after chemo, after transplant , a BT kid is never ever out of the woods , BT patients don’t really have a “normal” life again , BT patients are fighters , and will be for a while even after “cancer” is gone . I want you to understand that when you get involved with a BT patient , it is a forever thing . And I am sorry if I hurt someone using this example, I am not by any mean saying that Leukemia is a walk in the park( I thought Ju’s tumor was a walk in the park!!!) (pediatric cancer IS pediatric cancer) , but once chemo has worked , BMT has worked, blood is cleaned and you are in remission then cured , you don’t have to worry about all the issues that comes with the territory of brain rads and brain tumor . Again I don’t want to offend anyone , I just want people to realize that brain cancer goes way beyond treatment and that once you don’t show any evidence of disease , the battle is still on…

So when the oncologist comes and tells you that your 4 year old son has brain cancer , and tells you about what to expect for his near and far future your world comes crumbling down… And unfortunately it goes much farther than “just” not ever having kids… So then either you think selfishly or you don’t…you want your child to live at all cost or you want whats best for him …What IS best for him ?
This is where I am afraid I failed Ju . I wanted the best for him , I wanted it to all go away. I wanted him to be as perfect as he had always been . The thought of him going thru all these treatments to kill cancer but that would diminish his being and change who he was and make him so sick was driving me insane. I wondered over and over if it would be worth it. Did I want my child to live at the price of not being quite the Julian I knew and loved ,did I want him to live no matter what and how much hell he had to go thru? Maybe I didn’t want him to live bad enough if it meant he would have to suffer for it… What right did I have to think I could make that choice for him? God hears even our thoughts… Again, it goes back to not believing enough that Ju would be ok. Not believing that God would see us thru and that HE would be enough…

But my main goal tonight was to open your eyes to what BTs are like and remind you to not walk away if you are involved with BT patients because they WILL need your support for life!!!!

Good night…
Mimi

Sometimes I can't put things like this into words. Mimi did it so very well, thank you. So tonight, and every night, I continue to pray for Hannah and for all of the cancer children, known and unknown. I'll make another post about some other things happening with Cans for Cancer, our clinic visit this week and about some of our close cancer friends soon. They really need our help.

xoxo Kim